ETA: Sorry this is so long! It seems to be confusing people whom I have left thinking I had posted a question. And, because I wrote such a looooong post, I just can't go back and try to figure out where I misled. So, I hope to share this info so that others may not have to reinvent this particular wheel. I'm good with my plan and feel optimistic. Well, I feel optimistic about my bones. ;0)
Again, sorry about the length! Said the Bishop to the...
I have had severe osteoporosis since I was 38 following a hysterectomy/oophorectomy at 33 for severe endometriosis which began at 29 mere weeks after I came down with ME. The osteoporosis was discovered when I fell while skating (during a period of much reduced ME symptoms) and broke my pelvis and my radial head. I was treated with Fosamax which coincided with an increase in ME symptoms (I have no idea if the Fosamax was causal in any way) and was discontinued. I then pretty much ignored it for a couple of decades. Then... ice is not my friend and I fell on ice and broke my shoulder 3 years ago, fell on ice and smashed my wrist and two arms bones 2 years ago, and fell on ice and injured (but I'm not convinced I broke it as the X-rays were inconclusive) my other shoulder. After the first break, I had a bone density test which indicated that, in many locations, I hovered around -4.2. That is a terrible, awful, very bad score. I'm very reluctant to take the bisphosphinates (sp?) as many experience pain as a side effect, there is something called atypical femur fracture which has occurred to patients, and it can result in osteo-necrosis of the jaw following dental surgery which is a problem for me as I have teeth with old root canals which may need to be removed at some point (two were removed last Sept.). My endo has hooked me up with the Forteo people to see if I can get it on compassionate grounds. I'm torn. I don't know if I want them to say yea or nay.
For the past 18 months, I have taken cal/mag, D3 (I was very low), Vit K - both mk4 and mk7, and strontium citrate.
Strontium is a metal which is laid down in the bones and is heavier than calcium. So, part of any improvement is because DXA scan results will improve simply because the bones will look more dense. But, strontium also improves osteoblast activity and, maybe, inhibits osteoclast activity
After one year on Strontium Citrate, my bone density improved from -4.2 (terrible, terrible, terrible!) to -3.7 (only terrible!). That's a huge improvement in one year. Huge! Of course, some of that will be simply the heavier weight of Strontium. But, some of it will be actual increased density. I'm kinda hoping that I am not approved for compassionate use Forteo until at least I can have a 2 year DXA to see how much more I have gained.
http://www.webmd.com/osteoporosis/guide/strontium-treatment-osteoporosis
The above was from a neutral source but Strontium is a big topic on the osteoporosis boards. The board I find the most useful is: https://www.inspire.com/groups/national-osteoporosis-foundation/
There is, of course, a wide range of participants on the forum. Some are very medically oriented and some are very supplement oriented and some, like myself, are very results based, follow the studies and adopt that which has a successful study, even when not entirely conclusive, so long as the subject of study was relatively safe. The Japanese study info guided my MK7 and 4 choice. There are a lot of very intelligent people on the forum who are generous with information, links, advice... not all of which should be taken, of course.
Do check out the Inspire group. One of the things I found most surprising was the number of relatively young people who were extremely active and sporty and who still, sometimes quite young, developed osteoporosis. That made me feel less guilty about my lack of exercise. If there is some link between osteoporosis and ME, I would not be surprised but in my case (very early surgical menopause, strong family history of osteoporosis, etc.) I'm not banking on it. Although, even in my case there may be a link as the endometriosis that led to the hysterectomy is linked to ME, statistically speaking, so... who knows.
Big hello to anyone who is still here and who was here when I was last!
Peace out
MEkoan
Again, sorry about the length! Said the Bishop to the...
I have had severe osteoporosis since I was 38 following a hysterectomy/oophorectomy at 33 for severe endometriosis which began at 29 mere weeks after I came down with ME. The osteoporosis was discovered when I fell while skating (during a period of much reduced ME symptoms) and broke my pelvis and my radial head. I was treated with Fosamax which coincided with an increase in ME symptoms (I have no idea if the Fosamax was causal in any way) and was discontinued. I then pretty much ignored it for a couple of decades. Then... ice is not my friend and I fell on ice and broke my shoulder 3 years ago, fell on ice and smashed my wrist and two arms bones 2 years ago, and fell on ice and injured (but I'm not convinced I broke it as the X-rays were inconclusive) my other shoulder. After the first break, I had a bone density test which indicated that, in many locations, I hovered around -4.2. That is a terrible, awful, very bad score. I'm very reluctant to take the bisphosphinates (sp?) as many experience pain as a side effect, there is something called atypical femur fracture which has occurred to patients, and it can result in osteo-necrosis of the jaw following dental surgery which is a problem for me as I have teeth with old root canals which may need to be removed at some point (two were removed last Sept.). My endo has hooked me up with the Forteo people to see if I can get it on compassionate grounds. I'm torn. I don't know if I want them to say yea or nay.
For the past 18 months, I have taken cal/mag, D3 (I was very low), Vit K - both mk4 and mk7, and strontium citrate.
Strontium is a metal which is laid down in the bones and is heavier than calcium. So, part of any improvement is because DXA scan results will improve simply because the bones will look more dense. But, strontium also improves osteoblast activity and, maybe, inhibits osteoclast activity
After one year on Strontium Citrate, my bone density improved from -4.2 (terrible, terrible, terrible!) to -3.7 (only terrible!). That's a huge improvement in one year. Huge! Of course, some of that will be simply the heavier weight of Strontium. But, some of it will be actual increased density. I'm kinda hoping that I am not approved for compassionate use Forteo until at least I can have a 2 year DXA to see how much more I have gained.
http://www.webmd.com/osteoporosis/guide/strontium-treatment-osteoporosis
The above was from a neutral source but Strontium is a big topic on the osteoporosis boards. The board I find the most useful is: https://www.inspire.com/groups/national-osteoporosis-foundation/
There is, of course, a wide range of participants on the forum. Some are very medically oriented and some are very supplement oriented and some, like myself, are very results based, follow the studies and adopt that which has a successful study, even when not entirely conclusive, so long as the subject of study was relatively safe. The Japanese study info guided my MK7 and 4 choice. There are a lot of very intelligent people on the forum who are generous with information, links, advice... not all of which should be taken, of course.
Do check out the Inspire group. One of the things I found most surprising was the number of relatively young people who were extremely active and sporty and who still, sometimes quite young, developed osteoporosis. That made me feel less guilty about my lack of exercise. If there is some link between osteoporosis and ME, I would not be surprised but in my case (very early surgical menopause, strong family history of osteoporosis, etc.) I'm not banking on it. Although, even in my case there may be a link as the endometriosis that led to the hysterectomy is linked to ME, statistically speaking, so... who knows.
Big hello to anyone who is still here and who was here when I was last!
Peace out
MEkoan
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I have often wondered what was happening to you and I am so sorry to hear of your osteo problems. I don't know how you cope with it. ME is more than enough to struggle with, but I for one have found that as we pass the first flush of youth 
